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The Autism Rights Movement

I’ve heard these arguments before and been swayed by them, both in the case of the deaf community and on the matter of mental illness. But to me, autism was different. Whereas deafness creates relationships, autism seems to cut people off from one another. I took the much-publicized agony of parents of autistic children to be a marker for the despair of their children. Autism’s deficits—for the head-banging, nonverbal children and for the socially inept, obsessive ones—seemed simply too bleak to celebrate, and I did not see how any wishful rhetoric could alter that fact.

Kathleen Seidel is the owner and operator of the Website neurodiversity.com. She has a child with Asperger’s, had a father with similar qualities, and exhibits spectrum characteristics herself. “Honestly, I always feel kind of like an oddball whenever I’m in any kind of group situation, so the apple doesn’t fall far from the tree,” she says, laughing. “There’s a kind of polish that I’ll never have, and that’s just built into the wiring.” Her personal obsession is disentangling conflicts of interest in lawsuits brought by parents who believe that vaccines caused their children’s autism. (From the neurodiversity perspective, the escalating vogue for arguing that vaccines cause autism is not just incorrect but offensive, implying as it does that their condition is a side effect of poisoning.) But this is just a piece of Seidel’s larger project of exalting autistic people. For many parents, an autism diagnosis is a crossing into hell. Seidel sees it otherwise. “I think of diagnosis as an aid to pattern recognition in our lives,” she says. “We could make sense out of things that had been inexplicable to us; we felt validated. I encountered the word neurodiversity, and it just sang to me. I thought, What a beautiful word, that encompasses the reality that God has many different ways to build a brain.”

I invited Seidel to stay with me in New York for a weekend so that she could introduce me to the debates around neurodiversity, and she attacked the task with the elegant force of a great lawyer defending her favorite client before the Supreme Court. She has the activist’s urgency, the scholar’s rigor, a broad-ranging sensibility, and a great laugh. She trained as a librarian, wrote a Sufi cookbook, and celebrated her marriage, in 1982, at the Mudd Club. Tall, angular, a little geeky, attractive, with a penchant for big hats and sunglasses, she has at first that air, common to people on the spectrum, of finding social interaction pointlessly exhausting. Once on her topic, though, she lights up like a neon sign. We sat up late every night, cross-legged on the floor, reviewing case after case, and she told them with the punch of Dickens describing Jarndyce v. Jarndyce. She is staunchly unabashed by her many formidable opponents; she describes herself as a “1,000 percenter.” A recent profile of her in the Concord, New Hampshire, Monitor, her local paper, quoted a professor who works on autism calling her “the Erin Brockovich of autism-spectrum disorders.” She told me, “Juries and judges hear sad stories, and it’s totally logical that people’s hearts will lead the way. But hearts leading the way don’t always lead to justice.”

Seidel has had occasion recently to live this insight. She was served an incredibly far-reaching subpoena on March 26, demanding all her Website’s records and an extraordinary range of other documents including canceled checks, tax returns, Lexis/Nexis records, e-mails, information pertaining to contact with “religious groups (Muslim or otherwise),” and on and on. The subpoena was issued by the lawyer in a vaccine case within hours of her posting an article critical of his integrity. It appeared to be a craven attempt to intimidate Seidel, who responded with Aspie meticulousness, moving that the subpoena be quashed on grounds of sanctionable abuse. Seidel became a cause célèbre, and on April 21, a judge ruled in her favor. The subpoena intended to silence her views instead served to broadcast them—testament to both her wit and her tormentors’ foolishness.

“So I have another question to ask you,” I said cautiously.

“Ask me a question. Kick me in the ass,” she said, with typical feistiness.

“When you realized that your child had Asperger’s, did you want to do anything about it?” I asked. “Did you want to ameliorate it? Did you want to celebrate it?”

It had been a challenge, she acknowledged, to accept that her child did not want to be touched, would avoid eye contact. But by the time she heard the diagnosis, she’d moved past that stage. “I wanted to figure out what my child needed,” Seidel said. “I wanted to figure out what my child needed to thrive, for fulfillment.”